1. The power of people with dementia
By Mick Carmody
3 November 2016

2. My presentation today:
My experience of living with dementia
Diagnosis
Post diagnostic support from the health sector
How it feels when things get worse
Finding support from Dementia Alliance International
The power of people with dementia
Online support groups
Peer-to-peer support

3. Diagnosed with dementia
Difficulty getting a diagnosis
My story
Advised: I only have 5 years to live
I was Prescribed Disengagement®
“Go home and prepare to die”
My response:
What is the use?
Only 5 years to live 
Hopelessness and depression
WHAT NOW?

4. HOW MUCH IS SPENT HELPING US WHO ARE LIVING WITH DEMENTIA NOW????
I HAVE DEMENTIA
YOUNGER ONSET DEMENTIA
FTD WITH PPA
I NEED HELP NOW!!!!!!!
TERMINAL – PLEASE GIVE ME WITH THE SAME SUPPORT AS EVERYONE ELSE WITH A TERMINAL ILLNESS
BILLIONS OF $$$ SPENT ON RESEARCH EVERY YEAR
RESEARCH NOT HELPING ME NOW
HOW MUCH IS SPENT HELPING US WHO ARE LIVING WITH DEMENTIA NOW????
ALMOST ZERO-WORLDWIDE

5. Where do we go for help? What help is there?
very difficult to find services and support
Minimal age appropriate help
Not enough YOD key workers
Am I the only one?
Feelings of isolation and loneliness
What now?
Nowhere to turn…

6. black hole of depression…
Post Diagnosis
From being in a
black hole of depression… ​

7. To… Living Well With Dementia
I eventually ignored the well meaning advice from health care professionals
I was introduced to Dementia Alliance International (DAI)
DAI taught me: I AM STILL HERE I AM STILL ME
I then focused on Mick Carmody’s life, and on LIVING, not only dying
Hobbies
Likes & dislikes
Family

8. Please talk to me Talk to me – not about me I am still here
I am not deaf
I can still understand and talk
Even if I need disability or other support
Most of us are not end stage when diagnosed
My carer is my partner in this experience
please include her, BUT,
NOTHING ABOUT ME, WITHOUT ME

9. PRESCRIBED DISENGAGEMENT®.
PLEASE STOP THE
PRESCRIBED DISENGAGEMENT®
I.E. STOP TELLING US TO GO HOME AND PREPARE TO DIE, VIA AGED CARE

10. You don’t look like you have dementia…

11. I joined a Dementia Alliance International Online Support Group
… and I am now the Global Support Group Manager, and facilitator and host of more than 8 support groups around the world!

13. Life after Diagnosis Dementia Alliance International Empowerment
Global family
Support
Full time (unpaid) job!!

14. Then things changed Intense pressure in my head Admission to hospital
Aneurism
Pain
Slurring my words
Primary Progressive Aphasia

15. Increasing dementia disabilities
Black hole (again!)
Shock and grief
Male pride
Support from others in the support groups
Getting back on my bike!

16. Alzheimer’s Australia Dementia Language Guidelines Talk to me, not at me or about me What are my likes, dislikes

17. Why I speak out
As there is no cure, I want to be supported to live well, and not only supported to die from dementia.
Nothing about us, without us.
I am the expert of my lived experience of dementia.

18. DAI Vision A world where a person with dementia continues to be fully valued and included.

19. DAI Support Weekly online support groups Peer-to-peer support
Monthly Café Le Brain
Monthly educational Webinars
Blogs and newsletters
Publications, e.g.
Human Rights: From Rhetoric to Reality
Supporting & Accommodating us at Conferences

20. Thank you @baldyme2013 info@infodai.org mikoc@live.com.au
Thanks you.